Again.

Well it happened.

This crazy swelling thing I do (Idiopathic Angioedema) is like the chip that lives on my shoulder. It’s a weight, you know? At any moment this thing can pop up a derail the course of my day, or week. All my efforts to contain and minimize and smash the damn thing into nothingness seem like I’m trying to soak up the ocean with a napkin. 

That’s not really fair though. I mean, this thing used to be all encompassing. Like, DAILY I would have these swelling episodes with itchy angry hives the size of dollar bills, and I’m not talking patches of hives I mean one great big GIANT red bump after another. The facial swelling has been so extreme that my skin would crack from the pressure as the burning screaming pain throbbed with even the slightest air pressure change in the room. There was a morning my son became nauseous at the sight of me (and he was 13). I have been unable to talk because of a swollen tongue on numerous occasions. There have been times where I sat in the waiting room at the ER spitting into a cup because my throat was so tight I couldn’t even swallow and it was effort just to breathe.

In the nearly six years that this thing has had it’s claws in me I have learned a few things. What to eat to have the best chance at minimizing the episodes. What to remove from my house so the chemicals wouldn’t effect me. What to launder my clothes in so that my skin would not be irritated. How quick to hug a person who has on perfume or cologne. When to drive myself to a location instead of riding with a friend because of the air freshener in their car.   How to say NO to all the things you want to do because you are unsure if you’ll have to take back the YES you give and leave someone in a lurch at the last moment. What it feels like to stay awake all night because you don’t know if you will wake up in the morning.

I have fought, literally tooth and nail, to get SOME measure of healing and this year I saw improvement. The change in my diet was a major impact a few years back when the episodes went from daily to about every 6 weeks or so. Then after the publishing of my book last year they dropped off even more. I went a whole SIX MONTHS without a swollen face! It was a glorious reprieve. 

So last night my beautiful streak was broken. As I was settling the tiniest into her bed I felt the telltale tingle that signifies the beginnings of an episode. My lip was burning and the fear that accompanied it was threatening to overwhelm me. Then all the racing thoughts. What did I do to upset my system? How had I failed? Did one my preschoolers touch me with something on their hands? Could it be something on the new shelf I got for the girls room? Did I put too much salt on my dinner? Is this the episode I have been waiting for, the “big one” that finally kills me? Who will watch my children if I go to the ER? Who will do all my jobs if I don’t show up tomorrow?

Over and over and over again the thoughts swirled and raced and raged through my head. My husband asked if I wanted some water and I couldn’t respond because the answers all spiraled into bigger questions and tangled up together so that I couldn’t even pick one thought out from the rest.

But here I am. It’s morning again. Somewhere in the night alone with my bible I remembered. 

My pain has a purpose. 

I don’t know what it is that keeps you up at night. I don’t know what makes your head spin like schizophrenic carousel or your body to rebel against you. But I DO KNOW that you are not alone. Our shoes aren’t the same size or style or color and I can’t walk in yours the same way that you don’t walk in mine. But I’ll walk next to you. And hold your hand.